Category Archives: Perceptions

Limb and life

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It has been over two years since I last added to this narrative. My silence has not been for lack of things to write about, but rather the topic I felt it most necessary to tackle has seemed impossible to share.

Around three years ago, having thoroughly worn out the legs I’d brought from Canada, I started seeing a prosthetist in Australia. My challenge in finding a suitably experienced prosthetist has always been that the rotationplasty procedure (what I chose in the wake of my cancer treatment to give me the foot/knee articulation I have as an adult) is not performed in this country. In fact, they are performed infrequently enough in other parts of the world that the pool of people with rotationplasties in Australia is miniscule. I know of one other. There are probably a handful of people with a little foot (LF) across Australia. The prosthetist I chose to consult with was based at a clinic in Sydney that had a great reputation, and I knew they had fitted one rotationplasty previously.

My interaction with the clinic in Sydney did not go well. A repair to my existing Canadian-built prosthetic damaged its joints, causing hyperextension to LF, which led to swelling. Up to that point, I had never had any problem with LF in the more than 20 years since the initial surgery. And the new prosthetics they built never fit right – the swelling reoccurred. A reoccurred – despite numerous tear downs and rebuilds the prosthesis’ socket was never adequate. The swelling persisted, both in my toes and on the side of my ankle.

The clinic and I ultimately spent a year tinkering and I spent the same time period getting by. When the prosthetist finally said, “I don’t know what else to do”, I went to see a rehab specialist. After some months of waiting for an appointment, the specialist and his team (that consisted of an intern, resident, physiotherapist, prosthetist, and probably others) considered my case and… shrugged their collective shoulders.

That was when I first lost it, saying, “You’ve got to have something more to offer than that!” The specialist sent me for an MRI.

After five months of waiting on an MRI appointment, the scanned showed swelling of Little Foot’s ankle and over the toes (No sh*t… ? Sigh). No obvious structural damage was evident in the images, although apparently the quality of the image was ‘really poor’. It would have been nice to know that at the time – that’s two and a half hours spent in a whirring tube playing Jumble® with the word ‘Siemens’ that I’ll never get back.

I started seeing a different prosthetist last January. I met him climbing, as one might expect. His professional training was trained in Germany, where rotationplasties are at least performed. He had actually seen a couple of examples of the procedure before mine. And. He is extremely committed.

However, the challenge I present to a prosthetist of course has grown. Poor LF has now been swollen for close to three years. Every time the new prosthetist and I try a different socket the fluid shifts. It’s a bit like chasing a moving target where the difference between a bull’s eye and abject failure is millimetres.

I have tried everything I can think of to reduce the swelling – cold therapy, massage, lotions and potions of all sorts, elevation, compression, inversion postures… the cold and compression seem to shift the swelling temporarily, but it quickly returns when I’m wearing my prosthetic. I’m about to embark on a trial of a diuretic, which I will take while attempting to avoid wearing my prosthetic as much as possible. That’s sure to be a treat – I’ll be producing more pee and need to hop to get around. The final alternative, I suppose, will be to not wear my prosthetic at all until the swelling resolves.

Needless to say, I’m worn pretty thin. When I’m at my best I am grateful –  grateful for the medical resources to which I have access, grateful for my understanding of pathophysiology, grateful that I’m still very mobile, grateful that I can still climb with some ability, grateful that I can still get up and do my yoga practice.

But when I’m not at my best my mind drifts to a future that may or may not come to be. A future in which I need to find another job. One in which my financial security is compromised. One where my independence is under threat. One filled with physical regression as opposed to progression. A future where I cannot walk.

So yeah, when I’m not at my best, I worry this part of the journey is only beginning.

Member Benefits

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Inspiring people in this world – they get pushed at me, or else I tend to get introduced to them. Over the past few years I’ve had the pleasure of meeting more than a few. Which is why I write about inspiration. Same as you, I talk about inspiration because I’ve been inspired.

Recently though, I happened to meet a guy with a humble kind of fortitude that is worth actually introducing.

I met John through a prosthetist in Australia that I visited for an emergency joint repair. The long-term fix required the welding of little bits of metal into the joints. The prosthetist turned to me and said “I could do this for you, but the thing is there’s a guy who lives not far from you who could probably do it better”, as he passed along the guy’s phone number.

I rang up John totally out of the blue, and he invited me out to his home-based industrial workshop. From what I gather, John is a jack-of-all industrial trades and design kinda guy, but without the engineering degree. His workshop is massive and full of all kinds of cool-looking stuff I can’t identify. From my perspective all that matters is that he’s got a TIG welder and he knows how to use it. The shop also contains a number of high-end racing motorcycles and the trailer to haul them around in.

John was in a motorcycle accident involving a car 12 years ago. He broke his back, hips, pelvis, and legs. His right leg was fractured in six places. As he recounted, “they told me I would never walk again, when all they really needed to do was take me right leg off” [under-the-breath chuckle]. They did take his right leg off, quite high above where his right knee would have been.

For the record, he walks. He also works in industry. He asked me if my leg ever hurt, and then went on to explain “…me leg only really bothers me when I’ve had a 12 hour day on a ladder”. He took a pay out after his accident. As a result all of his prosthetic expenses today come out of his own pocket. The obvious solution to this little challenge was to make his own legs. For real. Apparently John shapes his sockets by heating them up, putting them on, and bearing down on them while riding a stationary bike. Or something like that.

Some time ago, he got on a motorcycle again. He now races against ‘normals’ without wearing a prosthetic, rather attaching a platform to the right side of his motorbike to put his stump on. The brakes he moves up to the left side of the handlebars. He swims and bikes as part of his training. He was a bit under the weather the day I first met him: “You know, I’ve been celebrating the past few days because I won me last race. I’ll tell you something, it makes guys sit up and pay attention when they get beaten by a guy with one leg.” [that under-the-breath chuckle again]. His season just recently finished. John ranked second…Nationally.

One of the best things about having 1.5 legs is that I have an excuse to call up people like John. I’ve found that most people with artificial limbs are pretty forthcoming about how they manage to do what they do, I suspect because of all the often solidary trial and error one must undertake to figure out the technical stuff. It’s a cool little unofficial club. I mean, let’s be real, the cost of membership can be pretty high. But if you happen to find yourself standing in line, waiting to enter, I would suggest seeking out the members like John.

The Cat Killer

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Years with a prosthetic leg have provided me with some interesting encounters with curiosity.

During the end of high school I was a lifeguard and instructor at the local swimming pool. The first day of class was always an experience. From that vantage point, curiosity seemed to win out over the indoctrinated social politeness until about the age of 5 or 6. Frequently, the first class with five-year-olds would involve a brief circle of question and answer that went something like this:

Kid: “What happened to your leg?”

Me: “I was very sick when I was a little girl and the doctors had to take it off. They gave me a robot leg instead.”

Kid: “Oh, okay.”

And that was it. No further explanation required, and afterward the kids never seemed to take much notice. Sometimes there would be no words, and then one or two kids would slide across the circle to touch it, looking to me for permission that I always gave. I vividly remember this one class when the kids sat down in a circle and the little boy to my left slid right up next to me so that his right leg was touching my left leg, looked me in the eyes, and rested his hand on my leg without saying a word. He stayed there until I got the class into the pool.

I wrote about the curiosity of children in the post ‘One Leg, Two Eyes’, and how the response of others can shape that curiosity. One of the consequences of having a visible history of trauma is you see, on a social level, what we do to shape, and restrict, curiosity.

Curiosity has a cultural element. In places I’ve worked in Southeast Asia, including Sri Lanka, India, and Indonesia, curiosity seems to be something that is embraced, or at least not discouraged. I go for massages from local women because it gives me an opportunity to talk to them, and put money back into the local economy in exchange for a service (as opposed to stuff, see the post First World Problems). Without exception, all of these women have asked me what happened to my leg. The last time I was in Indonesia the masseuse put her hands on my leg while saying, “I’m sorry, I’m sorry, I’m sorry.” She ran her hands the length of my leg, and it was clear she had never seen anything like it before. Her curiosity was palpable, and I sensed there were many questions she wanted to ask. It seemed that only her English held her back.

Compare this to a recent encounter I had with a woman from work, here in Australia. We’ve known each other for months, and I’ve been to her house a number of times. She came to drop something off at my house, and I answered the door in shorts and a T-shirt. We had a conversation standing on the front porch, while she clearly made an effort not to even glance at my prosthetic leg. There’s no way she didn’t notice. She drove away without saying a word, and we’ve never discussed it since.

Humans are naturally curious beasts. Friendship and intimacy develop from mutual exploration into the human experience of others. I believe some of our ability to connect with one another has been lost in Western culture, and that this is, in part, because of the way in which curiosity gets smothered in favour of politeness, or social correctness, or our fear of asking too much.

Don’t Buy the Big Bag of Dog Food

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When I was in Vet School, I had this professor who would occasionally drop the phrase “Don’t buy the big bag of dog food”. He didn’t intend his comment to be insensitive, or EVER used with clients. Instead he employed it as a tool to link specific disease conditions with a prognosis. For the record, his expression had the intended impact.

This came to mind when I was having a conversation with Cathie Coward, the woman who took the photographs of me you might have seen in my posts ‘Function / Form’ and ‘Our Cancer Lexicon’.

Cathie and I recently got together while I was in Hamilton visiting my family. We hadn’t been in touch for many years, until I emailed her about this SGL blog project. She and I agreed that perhaps some ‘twenty years later’ pictures would be an interesting undertaking, so we spent a day out together, during which I got on a climbing route or two and put myself into a few yoga postures. Cathie also recorded a bunch of audio for an article that was to be published in the Hamilton Spectator.

As a starting point to our conversation Cathie had me flip through Kate’s Story – something I hadn’t done in a very long time. She mentioned a picture I couldn’t recall, from a bone scan that was done around the time I was diagnosed. She recounted showing this image to a physician friend of hers while telling him about the Kate’s Story concept. She told me that when this man saw the image he advised her “don’t get too attached to this little girl…” the human medicine equivalent to “Don’t buy the big bag of dog food”.

I was taken aback when she told me about this conversation, and even more so when I looked again at the image that I hadn’t seen in so long – it clearly shows just how extensive the bone cancer was in my left femur. As a veterinarian today, my interpretation would have been similar to that of the physician back then.

If I think back I can get a handle on the idea that I walked a tenuous line during that period. There were times when I was really sick from the chemotherapy, and I suspect now that the situation was quite precarious.

Unexplainably, back then, the end of my life at a young age never really occurred to me. Though the experience left a lasting impression. Today, I feel acutely aware that, while life is not short, time is indeed quite precious. It makes me tap my one foot when someone is late for a date.

Alright, until next time… For the truly rabid fan-folk, here’s a link to the article I’m talking about and a few recent pictures that didn’t make the cut to the newspaper page.

 © Cathie Coward

 © Cathie Coward

 © Cathie Coward

  © Cathie Coward

Guys And Dolls

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A few months ago I was having a chat with Craig Demartino, one of my climbing friends at Paradox Sports. We were talking about the Mountain Games in Vail, Colorado that are held each June. The conversation went something like this:

Craig: It would be awesome if you could come to the Mountain Games this June.

Me: I would love to but sadly I’ve got prior work obligations.

Craig: Here’s the thing. We need more [disabled] women. Last weekend at the American Bouldering Series we had 6 competitors, 5 men and 1 woman. I don’t understand it. I meet lots of disabled women, just like I meet lots of disabled men. These women are really amazed by what we’re doing but, with few exceptions, yourself included, they’re not stoked to get out there.

Me: Craig, it’s your stubbly chin. But, let me get think about this for a minute because the language is really important… Umm… “To overcome is a more masculine approach while to endure is a more feminine approach.”

Craig: [Pause] You gotta put that on a t-shirt.

I have spent lots of time thinking about gender and disability. Craig’s observation is a common theme that runs through these thoughts. But I haven’t come up with much more in the way of explanation other than… men and women are expected to do disability differently.

There is a quote from a TED Talk by Brene Brown that nicely summarizes shame, social expectation, and gender: ‘For women, shame is “Do it all, do it perfectly, and never let them see you sweat…” Shame for women is this web of unattainable, conflicting, competing expectations about who we’re supposed to be, and it’s a straight jacket. For men, shame is not a bunch of competing and conflicting expectations, shame is one [expectation]: “Do not be perceived as weak.”’

I think, for disabled men, climbing can be an avenue to overcome society’s tendency to view you as weak. For women it’s different.

To climb is to sweat, and – at least for me – it’s an outward, visible struggle. In yoga, my teacher Jeff likes to call it the elegant struggle. But I can assure you that while I’m climbing there’s very little elegance and an extra helping of struggle, counter to Brown’s ‘social expectation’.

The irony is that climbing is inherently disabling, never mind gender or physical ability. Climbers at any level know all too well that if you are ‘able’ to climb every route that you attempt, then, well, you’re missing the point of the whole activity. You would be doing yourself a disservice by not attempting routes you’re presently disabled to do.

Only by attempting and failing can gains in ability eventually be made.

And besides, that’s where the laughs are.

I’d Like To Thank The Academy

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From time to time someone tells me I’m inspiring.

Now, don’t get me wrong. Being told I’m inspiring is really nice to hear, particularly in the context of my writing, where I feel like I lay everything out for all to see. Often, though, the compliment comes in the context of ‘you bike, ski, climb, practice yoga, surf, train hard… You don’t let it stop you!’ And yeah, it’s nice to hear in this context too. But always, in the back of my mind, I feel like a bit of a fraud.

The thing is – I’m not particularly good at anything athletic. I’m about as far from ‘a natural’ as you can get. It also never occurs to me that it, being my artificial leg, is something that should stop me. I engage in active pursuits because I want to, because they’re fun, and rewarding, and enriching, and challenging. Whenever I am trying something new, the thought that ‘this is something that I can’t do, or shouldn’t be doing, because of my artificial leg’ never really occurs to me. Looking back, I think the reason this doubt doesn’t interfere has little to do with me, and much more to do with a couple of key early influences, combined with good fortune later in life (such as my visit to Jeff and Harmony, described previously).

One of those influences was my mother. She is a fierce lady. The stories I remember her telling during my childhood were about her days at the University of Queens, where she graduated with an honors degree in mathematics. Her class included only the second, third, and fourth women to do so. I also remember her telling stories of the non-Caucasian men she dated in those days. Her mother encouraged neither the maths nor the men, any more than did the society of the day. Intentional or not, I think the message I took away, very much unconsciously, was ‘you don’t drink the Kool-aid just because it’s what you’re being offered’.

I’ve always been one to mull things over (a reasonably apt critical thinker? I don’t know). I suspect I started questioning some social norms unconsciously, and very early on. As time has passed this process has become more conscious.

So. After I learned to walk again, it seemed only logical that I would learn to bike and ski again. And, as part of my rehabilitation, I took up swimming, and it turned out I was all right at it. So why not become a lifeguard? What is it about climbing that makes it not possible with three limbs?… And so on. I never consciously went through this thought process, but I must have decided somewhere along the line.

I never got to pick my mom, or the country I was born in, or my diagnosis with childhood cancer. I happen to be a bit (well, maybe a lot) of an endorphin junkie, and I love being active. I’m stoked that people find me inspiring, because I love to be inspired in turn, and love that there are people out there doing things that I find inspiring, but I can’t deny that it all seems a bit… normal.

AWKWARD Moments

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So yeah, I’ve gotten pretty good at keeping my artificial leg under wraps. I don’t feel nearly as compelled to hide it as I used to be, but there are still those in my daily life, particularly at work, who I’ve never raised the subject with. When they haven’t made any comment, I can only assume that they don’t know about ‘it’*.

One of the consequences of this charade – if you will – is that either the situation arises, or I develop a close enough relationship with someone, that I feel it’s necessary to tell them. Almost always, I feel apprehensive when this time comes.

It is rare that I get a good lead-in. I mean really, how often do any of us think to drop the question ‘any major childhood illnesses or artificial body parts we have yet to discuss?’ Since the topic is something that doesn’t naturally come up, I always feel like I’m raising it out of the blue. My default opening is ‘there’s something I want to tell you…’ Yeah, I know – I’m setting myself up for awkward out of the gate. I’m open to suggestions.

Then there’s the looming discomfort about what reaction my revelation is going to receive. Generally, these fall into one of three categories; The first is the “I know”. The second being the “oh…”, followed by a look of confusion, followed by awkward silence. I still don’t know how I’m supposed to dispel the tension.

The third category is the “…Really?” My favorite variation on this theme coming in the form of “you’re joking!”…which I can’t help but find entertaining. Who makes that joke?

(I have contemplated making that joke: “No shit. After I lost the limb in a freak shark accident, I put myself through grad school by contracting my leg to mule contraband. No border guard wants to touch it.”).

Sometimes what follows is a bit of Q & A. Other times the conversation moves on to a different topic. Generally, I don’t volunteer many details. I believe if someone is interested, they’ll ask.

I struggle. I am by nature quite introverted. Decades on, telling someone about my artificial leg still feels like I’m opening up a part of my life that I’m very private about… or was private about, until I began this blog.

*Do I say ‘it’ or ‘them’ as I’ve got more than one leg to wear?

I’ll Be One In A Million If You Will Too

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For some reason, one in 50,000 is a number that has stuck in my head over the years. When I was diagnosed with Ewing’s sarcoma this was what my family were told was my chance of getting the disease. (What can I say, other than, “Thanks, medical profession, for quantifying the rarity of bone cancer in children”?)

I don’t remember in which context I was told the number, just the number itself. My mom actually remembers the number as being much, much larger. In reality the precise value of the number is irrelevant, and it’s only the magnitude that means much. Today, as someone who studies disease in populations, the idea of telling an individual or family such a figure seems strange. But maybe someone asked a doctor, and this number was the answer given.

The thing about chance, or more accurately risk, is that it is only really meaningful if you haven’t yet developed the outcome. Maybe you can change the risk of an outcome by avoiding certain known ‘risky’ behaviours such as driving or smoking, but it is only in very rare cases that the risk of an outcome can be eliminated. Or the risk factors may be things you can’t change, like sex or age. But, the thing is, quantification of risk becomes somewhat meaningless once you’ve developed the outcome. You’re ‘The Chosen One*’, whether you like it or not.

I tend to think about the chance moments in life as a series of decks of playing cards. We have a measure of control when we’re drawing the card, but there’s always a large element of chance to the whole process. And when it comes to the risk of uncommon things happening, in the vast majority of draws from the deck the uncommon doesn’t happen. Irrationally, it’s this same fact that serves as reassurance when a person goes swimming in the ocean in which somewhere there are sharks.

But sometimes what is very uncommon does happen. To be uncommon, but still occur, it has to happen to someone. It’s this fact that keeps the lottery tickets selling, though it contradicts the logic employed above.

At some point in life, something uncommon happens to just about everyone. And when thinking about that possibility, in conjunction with contemplating how we will respond to it, well, the possible futures are both endless and enriching.

 
*I’m always reminded of a quote from the original Buffy the Vampire Slayer movie. ‘Right. I’m the chosen one. And I choose to be shopping’.

Short Note

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For 15 years I almost never wore shorts. And I am selective about the circumstances under which I wear them. I always wear pants to work, where shorts are common attire. When out in the small town where I live, I typically wear pants. But, these days, when I climb, I almost always wear shorts. I do this because it’s too hot for pants most of the time, plus, it allows me to use the socket of my prosthetic to move up as I climb.  Also, I climb on a customized foot that is half the size of my right foot and I swap feet before climbing, which means that my leg is really no secret out at the crag.

However, it was not always this way. When I first started climbing about 5 years ago I climbed only in pants. I bought my first pair of shorts in a very long time about four years ago.

I chose pants as a teenage, as I was entering high school. It was a long time ago, but I think my decision had as much to do with my search for normalcy as it did with attempting to conceal my prosthetic. At that point in my life I’d spent over two years undergoing chemotherapy, surgery, and smiling bravely for concerned adults. I’d had enough of being gawked at. I was starting high school in a different city, which meant a whole new group of kids I’d never met. I think, like most adolescents, I just wanted to fade into the background.

Today, I continue to choose pants over shorts, mostly. I suppose this is because I want some control over my first impression on people. My gait is good enough that unless a person pays close attention, my artificial leg goes undetected. There are other things that I do. Without thinking. Almost.

When I sit with people on a couch, I will sit to their left so my ‘real leg’ is closest to them. And I will often walk just behind people if I’m concerned about appearing awkward, such as when walking on uneven or sloping ground. There are people I have known for years who don’t know about my leg, and in some instances they have found out only because I’ve told them.

We all do it: We form associations with the people that we know according to particular characteristics. These characteristics can be physical or associated with personality. We describe people to others according to these characteristics. And I suspect most of us have had the thought ‘I don’t want to be known as the [blank] girl.’

I am comfortable with my artificial leg, but I am uncomfortable with the idea of being described according to it. I’m happy to be ‘the tall girl’, or ‘the blue-eyed girl’. Just not ‘the-one legged girl’. And I’ll take pretty much anything over ‘the disabled girl’.

I listened recently to a podcast about an actress who manages this sleight of hand better than I. I’ve included a link to it here.

One Leg, Two Eyes

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There are a variety of reactions I get to my prosthetic when it’s out in plain sight. There is this reaction that happens with parents and children that I struggle with, and it happens with enough frequency that it is worth comment.

On one recent occasion I walked into a fruit shop on a Sunday afternoon – post climbing, clad it shorts, hiking boots, a T-shirt, and more than a bit of dirt. The place was busy, as expected, and there was a mother, and her child of about four years of age just down the aisle from me when I walked through the door. The child looked at my leg, gave her mom’s skirt a tug, and pointed. The mother pushed the child’s hand away and then used her other hand to turn the child’s head away from my direction. The child kept craning her head to look back, while the mother’s hand continued to oppose the turning of the child’s head. These types of interactions happen fairly regularly. There is one time I remember quite distinctly when the parent loudly ‘shhhhuusshed’ the child while standing no farther than five metres from me.

Over time I have come to try to connect with the children involved in these interactions. I see the parents, who I believe are suspended in fear and embarrassment, as being beyond my reach. On this occasion I made eye contact with the child and smiled, in hopes of acknowledging her curiosity and letting her know that I am a person much like her, just a little less symmetrical.

When I’m feeling less tolerant I am tempted to walk up to the parent and say something to the effect of ‘I may have one leg but I also have two eyes, and they work just fine. And just so we are clear, I see you.’

There exists no social script for such scenarios. I walk away from these encounters feeling disheartened. I’m not sure what the ‘right’ reaction is to a child’s curiosity about a physical characteristic that deviates from normal, and I doubt there is a ‘right’ reaction, but I believe that this kind of encounter sheds light on the pervasiveness of stigma in our society, and the ways in which it is fostered in children. I often wonder if there is any further discussion when these families go home.

My hope is that this blog helps to counter some of the stigma that has become so common in polite society. After 20 years with a prosthetic leg I have come to believe that by failing to talk about it openly and that by concealing it in public, I help maintain that stigma. I do not want that to be my contribution.